The bill was a huge step forward. The then children and families minister, Sarah Teather, promised it would "prevent parents being forced to go from pillar to post in a battle between different authorities and agencies".

The government was finally recognising the desperate reality facing so many families with disabled children who fight long and emotionally draining battles to get the support they need for their child.

Up until that point, support for disabled children and those with special educational needs (SEN) hadn't been looked at for more than 30 years.

Yet just nine months later, as MPs finally start to debate and discuss the contents of the bill, expectation has turned to despair. One mother from Cheshire who has a disabled daughter described the bill and proposed changes as "catastrophic".

With huge cuts to council budgets, it will be harder to get a statement or a joint plan in the future. And what about the 87% of disabled children who are not entitled to a SEN statement and therefore won't get the new plan?

The reality for families with disabled children

Our staff, who work directly with thousands of disabled children and their families across the country through our services and support networks, are hearing that the fight for support has already got harder with little sign of how government reforms will make a difference.

Examples of disabled children having to wait months for time sensitive therapy including speech and language, occupational therapy, and having to fight for critical pieces of equipment such as wheelchairs and orthopaedic boots, or for appropriate placements in schools, have become all too common.

We're hearing more horror stories of parents at their wits' end, struggling to hold onto their jobs and pay bills because they are having to fight for basic support.

Heidi, whose daughter has Down's Syndrome, said she felt let down by such a wasted opportunity: "The government doesn't understand just how time-intensive and emotionally draining it is to be the parent of a disabled child."

The consequences of not getting support

We know from our 60 years' experience of supporting disabled children and their families that in the vast majority of cases, the support families need is time sensitive.

Speech and language therapy, physiotherapy, equipment such as orthopaedic boots or wheelchairs are not the "nice to haves" in life. They are absolutely crucial to a child's development and there can be severe implications later in life if they are not provided in time.

These are challenging times for everyone, but disabled people and their families are being hit harder than most.

Professionals within these agencies are just as frustrated as parents that there is little they can do within the current system. The combination of all these changes is creating the most challenging environment for families with disabled children that Scope has ever seen.

And that's why we are turning to the government.

The government alone has the power to implement the changes needed to ensure disabled children get the support they need. It can ensure councils address the frustrating shortage in services for disabled children.

Yet, it is at a very great risk of squandering this precious opportunity and that is not a warning we issue lightly.

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